Conversations on Care and/in the Community

12.30 – 6.30

Keynes Library,

43 Gordon Square, Birkbeck, University of London

6th June 2019

Experiences and practices of care have changed dramatically in the past three decades. Since the passing of the NHS and Community Care Act (1990), healthcare, social care and short-term psychiatric care have been increasingly decentralised and delivered ‘in the community’. This shift has been both practical and discursive: altering the pathways by which care is accessed and the sites in which it is received; and changing perceptions surrounding the role of those receiving care in wider society. In the case of mental healthcare for example, it has led us to move from the ‘mental patient’ to the ‘service user’ as labels that define the relationship between persons receiving care and those providing it.

Thirty years on, community care continues to be a fraught subject.  On the one hand, it has been seen as having a democratizing influence, opening up the possibility for greater patient choice, and of integrating patients’ and service-users’ voices into care provision. On the other, it continues to be viewed as a chaotic cost-cutting exercise which leaves vulnerable people to fall through the cracks.

‘Conversations on Care and/in the Community’ invited researchers and writers from a number of disciplines to engage in a series of conversations surrounding these new social and spatial conditions of care in the twenty-first century.

Conversation 1: Momentarily Creating a Community

image available via Wellcome Archive
Mental Health Unit, (Image credit: Kings Fund)

How can we generate community and connection with and between individuals who seem to live without a sense of continuity? This question became the centre of our first conversation, led by Dr Liz Barry and Dr Martina Zimmerman, on care and dementia and Alzheimer’s. We found a possible answer in laughter.

Both Barry and Zimmerman work on literary and medical accounts of dementia, with Zimmerman also having a background in neuroscience. They began focussing on the way that experiences of dementia and Alzheimer’s would appear to disrupt possibilities for communication. In dementia patients the loss of the ability to remember finds its correlate in the loss of an ability to predict, making social interactions difficult even if they are based in the present. In the contexts of care relationships, Barry notes, this is added to an experience of the repetitiveness of the rhythms of bodily care through which social experience is mediated by an instrumental approach to time.

These temporal disruptions have spatial consequences. In a practical sense, they can lead to isolation. Individuals become in need of care, are relocated to care homes and removed from social circles. It is this trajectory that the protagonist of Alice Laplante’s Turn of the Mind follows. Laplante’s detective novel follows the life of Jennifer White, who is already suffering from Alzheimer’s when she becomes the chief suspect in a murder investigation. As Zimmerman suggests, Jennifer’s story is one of increasing dependence, isolation and linguistic difficulty even as she attempts to thwart the detective investigating her. This trajectory has a clear spatial element. Jennifer avoids prison but is nonetheless moved into spaces of increasing confinement: from her home, to a private nursing home, then to a public facility. Alongside this, Zimmerman notes, there is a sense that the felt space of the protagonist is also shrinking. Through its form, Laplante’s novel seems to suggest that memory-loss provokes or is accompanied by an affect of confinement and limitation, even before any practical re-organisation of space is imposed on the subject.

So what opportunities might their be for resisting this sense of confinement, and restoring feelings of expansiveness and social engagement with those suffering from dementia and Alzheimer’s?

Laughter, it seems, may well be a solution.  As Barry points out laughter is a non-verbal, non-narrative mode of affective communication. It is also constitutive of relations, even if they are ephemeral and transient. We might say laughter can momentarily create a community. Through moments of physical comedy, blunder and clowning, merriment overspills from one person to another and communicates in a way that is quite outside of intentional speech. (One may also look at the body of research on dementia and singing for an analogous example.)

The prevalence and possibilities for laughter in care relationships with persons with dementia and Alzheimer’s may also point to the existence of a greater organisation and value-structure for people with cognitive impairments than one might initially assume. As we discussed in the conversation, laughter and joking are more structured than play. To share a joke (even a physical joke) or create mischief requires an understanding of shared norms and values and of a social dynamic. In Laplante’s novel, mischievousness is an important part of Jennifer’s character, and an aspect which does not disappear as she loses aspects of her cognitive functioning. As she contemplates her future and her loss of cognition, Jennifer wonders where she will go, ‘and what tricks [she] shall play’ there.

If cognitive loss is sometimes experienced as a shrinking of felt space, then it may be that attention to laughter, jokes and mischief is a way of re-introducing expansiveness into someone’s affective experience. Such attentions and time creates the possibilities for improvised moments of community which might themselves be an important constituent of care.

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